By Anne Marie Allocca
At his side through brain surgery, a seven-month hospital stay that included five rounds of aggressive chemotherapy and an autologous stem cell transplant, the McGuinness family has the best reason of all to be thankful: "So far, so good," says Lori. Michael, who turned 4 on Monday, is doing well. He's also being honored.
The Valley Stream pre-schooler is one of 25 "Wish Children" who will be recognized by the Make-A-Wish Foundation of America, a not-for-profit organization that grants wishes to children with life-threatening medical conditions, at its 25th anniversary gala fund-raiser at Manhattan's Chelsea Piers on May 11. The honorees are being recognized as "remarkable children who know the joy of a dream-come-true, possess the power of wishful thinking, and serve as inspirations to future wish families," according to Patricia Clemency, CEO and president of the Metro New York Chapter. Michael will represent more than 5,500 children whose wishes have been granted by the Chapter since its inception in 1983. Lori learned of the honor from Clemency.
"It was such a surprise," she said. "I was very proud."
Though it has been two and a half years since Michael's diagnosis, Lori said she can't help but have flashbacks to Thanksgiving 2002. "The hardest part is that I can only live normally for three months at a time," she said, referring to Michael's regular checkups and MRI exams. "I can't imagine going back [to the hospital], but the reality is a lot of people have to, and we're no different than anybody else. Thank goodness for right now [that] he's doing well. I hope he continues to do so."
Michael was diagnosed with medullablastoma, the most common brain tumor found in children. While most children get to go home after each round of chemotherapy, Michael didn't. "[He] was on an enhanced program because they added the drug methotrexate, because they thought it had spread to his spine," Lori said. "It's a very toxic drug."
While mother and son spent endless nights in the hospital, the rest of the McGuinness family - Michael's father, Tony, his sisters, Ryan, now 10, and Mallory, 9 - were home, trying to make sense of Michael's illness.
"Ryan and Mallory were only 5 and 7, [so] they couldn't see from the outside how sick he was on the inside," Lori said. "Every weekend my husband stayed at the hospital and I would come home and spend time with the girls. Stolen moments were all I had with my kids from Thanksgiving until June. That was it. Thank God for my family and for my sister-in-law Rose. She really left her own life and gave up her life for our life and lived my life here."
Michael has a few memories of his lengthy hospital stay. He remembers Bill, a man who visited the hospital playroom three times a week and played guitar and sang to the children.
"For a lot of the time, Michael was in isolation and we weren't allowed in the playroom," Lori said. "Bill used to come in and sing to him in his room. Michael remembers Bill and that his guitar had stickers all over it. Just a few weeks ago Michael was in the car talking about Bill."
He also remembers the trucks outside his window. When he was moved to the bone marrow transplant unit, the doctors apologized for the view, but Lori thanked them. She was grateful for the dirt, mud and trucks busy renovating the hospital. "It was the one thing that was going to keep my son's sanity for being in isolation for a month, because we could look out the window at the trucks working," she said.
A few days before Michael's release, a social worker told Lori to look out the window. "There was a huge sign made out of two king-sized bed sheets - I have it in my garage - and it said, 'Hi Michael,'" Lori recalled. "It was being held by the head of the transplant unit, the head of the construction unit and a social worker. It was very touching."
During Michael's stay, doctors and social workers had contacted Make-A-Wish, but he was too young at the time. Wishes are only granted to children 3 and older. But Michael was hardly forgotten about. When he was four months shy of 3, the New York chapter of Make-A-Wish contacted the family to plan his wish. He chose a Disney cruise, which the family took last May. Michael's wish was one of 484 granted by the Metro New York Chapter of Make-A-Wish in fiscal year 2004.
"They really do try to grant as many wishes as they can," Lori said. "One of their biggest issues right now is to build the awareness of Make-A-Wish and how they would contact families for wishes. They feel there is a whole untapped market out there of children who really could use wishes and need wishes. If their doctor or hospital isn't affiliated with Make-A-Wish, then that's why they need to let people know they're there."
Lori's ties to Make-A-Wish go back 20 years. "I had a brother who died of cancer," she said. "He never got to accomplish his wish. Two years after that my mother started volunteering for Make-A-Wish. She has volunteered there for 18 years. She's on the clerical side because she didn't want to deal with the children, but she wanted to make a difference. She's their No. 1 volunteer!"
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